Tuesday, 14 April 2015

Back in February Womankind magazine put out a challenge. Have a week with no news. Write about it and send it in for a chance to have your story published. I had the week without news. I even wrote about it. Before promptly forgetting to send it into the magazine. In the process of cleaning up my cluttered desk top I found it again, two months late. So here it is my experience of a week with no news.

I wake each day as our
neighbour's growling four-wheel drive reverses past our headboard and
out into the street. Thin walls and a driveway less than a metre from
our bedroom negating any need for an alarm clock. I turn my head and
reach for my phone. The routine ingrained. But not today. Today I
pause. No news. The parameters are clear. The challenge accepted. And
already I am chaffing at the bit. My fingers hover over my phone
aching. But one click and there it'll be. The weather forecast on the
screen. The light flashing to let me know of messages and alerts from
Twitter, Instagram or Facebook. Social media my
all to willing dealer feeding my news addiction. Politics, asylum
seekers, disability advocacy and health reform, women’s issues, I
follow it all and I follow it ravenously. Cold turkey is not an
appetising option. But how to avoid news not just for the day but the
week?

News filters into every
aspect of life. The Borg were right, resistance is futile, at
least if you interact with the world. I can refuse to click on my
phone or open my laptop. I can turn off the television, and car
radio. But head to a public space and all bets are off. Radios play
in the shops and boards sit out front of the local news agency
holding headlines from the major news outlets. Glossy magazines glare
at me at the checkout and flat screens play overhead. Even in coffee
shops wisps of news flow from conversations at surrounding tables.
Short of becoming a hermit it is near impossible to avoid.

I recall as a child the
hourly news on the radio, the daily newspaper and the nightly news.
Now a 24 hour news cycle and rabid adoption of devices and a need to
know, make the news part and parcel of life. A constant whir
in the background even when you're not consciously attending.

There's a pressing feeling of being out of touch. Of missing
out. I pride myself on being up to date on major issues both here and
abroad. I discuss international politics with my children and watch
news documentaries as a family. To not have that link. To feel out of
place. Out of line with the rest of the world. Of time moving on and
falling behind. Twitching fingers and twitching mind. Used to being
fed continuously. Instant gratification available at the tap of my
thumb.

Silence. A week on, no
news means silence. But the silence is not without noise. Instead of
the noise of multiple lines of information, it is the noise of the
bird song and breeze. The turn of a page as it scrapes against my
jeans. The soft snuffle of my dog tangled around my feet. St Louis
Blues coming from the lounge and the tap of the keyboard as I
write without interruption.

Clarity with the
silence. A rejection of news and technology for a less cluttered
mind. A welcomed tradeoff that I had underestimated. Half-way through
I realised I wasn't missing the news. I wasn't missing the noise.
Once the restless agitation of cold turkey had passed I felt the
calm. News is so much bad. Pain and horror. Disappointment at the
political discourse and a sense of hopelessness at the tone of the
world at large. The meaninglessness of celebrity, dross that fills
the airwaves. The good works and silent struggles forgotten in favour
of the sensationalism and repetition. Not putting my feet in that
foetid pool is quite good for the soul. My family interrupted my
embargo to tell me of the passing of Leonard Nemoy. Spock no
more. But it was the only news I consumed in the seven days.

The world meanders on
changing little over the week. When the screens are lifted and I
emerge once more into the world of news the same conversations
continue. The rhetoric of the politicians the same. The evening news
follows the same patterns. The stream of Twitter continues as
outrage mixed with unoriginal memes. The lives of friends mattered
but the news as it is presented online and in print are seen with a
level of clarity. Step back. Be more discerning. Turn it off and
listen to the bird song more.

Monday, 13 April 2015

Lying on my side I could feel the hard tiles under my shoulder and hip. Poor absorption of food for years on end has left me with little padding on the tender bones that poke out. I could take out an eye with the knob of bone sticking sharply from my elbow or the pointy bit of sternum that sticks out just above the ever present pulse that spasms and bounces. And here I was again, communing with the short and curlies, dust, and ever present Freyja hair on my grey terry toweling bath mat. At least this time it wasn't through collapsing limbs or plummeting blood pressure. Though when I say "At least" what I really mean is a long line of expletives stretching off into the distance, far beyond the dusty underside of my bed, that I can see through the doorway of the ensuite.

I try to find a more comfortable position but no matter how I brace my body it all hurts. The green and white box in front of me has two delightfully bizarre yoga positions to choose from. Bum up or on my side. Put one leg here, another over there. Bend this bit and that. I wonder if I simply adopt Child's pose, can I cry "Mummy!" Physical comfort is further pushed down as I contemplate the process ahead. If I had any muscle strength left my nether regions would be bracing right about now.

Delay. Delay. Double check the box. Close my eyes and think happy thoughts. But no amount of puppies and kittens is going to help. No happy place is to be found. But the pain in my abdomen begs "Do it. Please just do it." A desperate rock hard abdomen is hard to argue with. So I don the gloves, lube up the applicator and resign myself to the inevitable.

I lie on the tiles as I wait for the contents of the bottle to work. It's been over a week since I last went. I have taken a laundry list of medications to get things moving. I employed all the maneuvers given by the local continence nurses. I watched the videos and studied the leaflets. I "moo" like a cow while bent in two, feet up on an overturned basket. And still nothing. Things go in but they never come out. My gut the Bermuda Triangle. And so I had to cry uncle and go from softeners and suppositories to the big guns, the enema. Stories of people so impacted they vomit up poo a good incentive to forego any last remnants of dignity.

1 in 2 people live with chronic illness. In disorders like Dysautonomia continence is a hidden issue. An unpalatable issue, but a common one all the same. When I hear people say all I need is a positive attitude I wonder if they could be all Pollyanna as they stick a tube up their bum and squeeze fluid up into the dark recesses of their body. Or when they have to explain the intimate details of their bowel and bladder habits to strangers. Or when they have to see a physiotherapist to learn how to poo again. Or when they have to consider more medications and stimulators and flushing and......all so they can do the most basic of bodily functions.

The nausea, the pain, the worries about malnutrition. They are part of life now. But it is hidden from sight. I went for bloods and the nurse said I looked great. Then she looked at my sour face and mumbled that she guessed I didn't come in when I was really unwell. And that's the problem. So much is hidden from public view. And so many don't want to know.

You see chronic illness isn't something you simply positive your way out of. It's not a question of attitude. It is learning to manage sometimes incredibly confronting and unpalatable symptoms and their equally confronting and unpalatable solutions, or partial solutions as the case may be. If reading this makes you feel uncomfortable, imagine what it is like to live with it every day. To have use suppositories and enemas because there is no alternative. A reader can stop reading. They can turn away and forget. For those of us living with chronic illness there is no choice. We must live with the unpalatable. We don't have the luxury to turn away and pretend it's not happening.

"I could never do that!"

Actually you can. You do what you have to do. You do things you never thought you could. Because there is no choice. It is simply life.

Those of us that live with complex chronic illness and disability are well aware of just what we have to do. What we can do. We do it and we get on with life.

And today I up my dose as it all starts to slow once more. And I talk to my nurse and I break out the gloves. And contemplate another day spent lying on the tiles.

Michelle

If you have problems with continence there are people who can help. Contact the Continence Foundation of Australia for more information on how to locate a clinic or practitioner. There are also links to videos for pelvic floor exercises and helpful tips. There is even a toilet map app which I reviewed here. Continence issues can affect anyone at any age. Don't suffer in silence, seek help and guidance. You are not alone and you don't have to be embarrassed. There are similar organisations in most Western countries.